PFO closure vs Plavix

ladycoz
  • By ladycoz · September 27, 2012 at 7:10 am · 87 replies
  • In Advice for other women with heart disease
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About 6weeks ago I went to the doctor with extreme fatigue and unable to find my words when I would speak. My Dr. sent me straight to the ER.. After a few hours of the ER and a clean CT scan I got better and they sent me home. The next day I went back to my PCP and she sent me to a neurologist. He sent me to have a transcranial bubble doppler. I tested positive for bubbles- 78hits while resting and a shower when bearing down. The neurologist told me this was severe and sent me to the cardiologist. I had a TEE which confirmed the pfo in my heart. He told me he wanted to send me to one of his partners to get the hole repaired. His partner put me on plavix. I have been having tons of symptoms for so long. Fatigue, daily headaches, tingling sensations in my arms and legs, edema in my legs, dizziness and foginess did I mention fatigue. Anyways I am scared. My sister died of stroke complications at the age of 44 and my mom is currently in a nursing home due to a series of strokes. I am afraid that meds are just not going to fix this. Am I overreacting? or should I seek a second opinion?

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87 replies    Reply

KAKLeon

There is some debate over PFO closures, but I had mine closed with an Amplantzer device and it was one of the best health decisions I've ever made. My transcranial doppler was severe too (sounded like a toilet flush!) and there was something about the "shunting" that made it sever too. The closure was easy, just like a cath, and after a week of worsening symptoms, I felt wonderful.

My closure was done by a pediatric cardiologist. They have the most experience with PFOs, so I'd recommend getting a second opinion with a ped cardio. Have him/her talk to your neuro too.

Good luck!
Katherine

ladycoz
  • By ladycoz
  • Reply 3412298 · In reply to 3412186 by KAKLeon
  • September 27, 2012 at 9:59 pm
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Thank you Katherine for your response! I never thought of a pedi cardiologist! I was just so determined to find a women cardiologist this time around. Now I have a little more options!

Chicken74

Hi, LadyCoz:),

I was having severe migrane with auras and blinding spots. They got so bad tat I was receiving shots of steroids in the back of my head. I also was experiencing weird fainting spells that left my head feeling very strange. I had a battery of testing by the neurologist giving me shots. They confirmed through a bubble test of brain and heart I have a hole. I was sent to a cardiologist who did the endoscopic echocardiogram at hospital and confirmed the hole. He said it was no big deal but sent me back to my neurologist because he didn't want to make the decision so me and the neurologist thought it was best I saw a heart doctor who specialized in PFO closures and he and I talked anout the risk, migranes and he mentioned my fainting spells were not just that but mini- tia's. I don't want to scare you but I agree with kak that a second opinion is a very good idea. He said I could be on blood thinners forever but he said for progressive with mini -tias that wasn't a good idea. We decided to close the hole with the device through a cath-lab procedure. He did tell me there was a 50/50 chance my migranes weren't going away but I haven't had any and its been a month and half to two. I was put on plavix but was allergic so I am noe on effedent and doing pretty good. I am back at the gym. My chances fir stroke is cut down severely over 50% but not totally he told me. My head is feeling funny again but I am hoping its sinus ;-). I have had a treatment done of bubble test and will find out my results next week. I feel more energized and a better person except for side effects of the medicine. That is a small price to pay for ending up dead from a full stroke. I saw him on a Friday and he had me in hospital by next Friday, he wanted mine done that next Tuesday or Wednesday. He was very honest with me and up front and I like that. I got second opinions that pointed towards closure as well. Hang in there and please keep me updated!

Christy

JSantos
  • By JSantos
  • Reply 3415704 · In reply to 3415567 by Chicken74
  • September 29, 2012 at 8:44 am
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HI! Yep I am WAITING to get my PFO closed. Lots of symptoms for me - TIA's, shortness of breath, chest pain, did I say shortness of breath?!? My PFO is complicated by bidirectional/2 way shunting and also a Atrial Septal Aneurysm - both increasing my risks.
But yes, to close a PFO or not is still controversial - at least when patching it with the device that has not been FDA approved yet - so far my insurance will only pay for it if it is done via an open heart procedure in which they suture the hole closed (stitches).
Go to PFO Research.org and also find the PFO Research group on facebook - great info and alot of support.
At the end of October 2012 there will be new results out from the RESPECT study .... it may very well change the course of treatment. Previous studies with older devices were not so great. I THINK once the results are published (from the RESPECT Study) the FDA will approve transcatheter closure
God Bless

ladycoz

Thank you ladies for your input. When I had the appt with the OLD cardiologist he blamed putting me on Plavix all on insurance companies. He said they required at least 90days medication therapy. When I called my insurance company they said they did not require "medication therapy". The insurance rep told me that if the doctor recommends surgery then there is no problem. When I called my old cardiologist to ask about this,His nurse called me and told me that the DR. said that even if I had the PFO closed I could still have symptoms. She told me that I could have symptoms for the rest of my life! I came home from work devestated and crying. Who wants to walk around with all these symptoms? I know my old cardiologist sure wouldn't!
Yesterday I got a call from my neurologist who AGREES that closing the PFO is the best thing! He is referring me to a cardiologist who specializes in closing the PFO. YAY!!! He said that some cardiologist just don't believe it will help. What a crazy notion. I mean come on. The hole is not suppose to be there. Isn't it just logical that if your are at risk for stroke you get this thing closed?
I am just so glad I found this website! You ladies are awesome! This website has made me see that I am not alone in this! This is real!

Chicken74

We are here to help you through this. I am glad you had opportunity to get another opinion amd another cardiololgist. Let me know how things go.

Lee_56

I am learning a lot from all of you, but still don't understand everything ! I have Systemic Lupus (central nervous system) and never thought of having a heart attack but have learned since that heart disease involvement is a major concern with Lupus. Before I had three stents implanted last May (after a heart attack), I have having lots of heartburn and many episodes of Migraine visual aura (usually without the bad headache - just low grade pressure and some brain fogginess along with the blinding aura). Since my heart surg., I have had much less heartburn and only a couple of migraine optical auras. Don't understand Why, but am glad for it !!

Chicken74

I had the same kind Lee now almost two months nothing! :)

Chicken74

I had the same kind Lee now almost two months nothing! :)

JSantos
  • By JSantos
  • Reply 3417754 · In reply to 3416355 by Chicken74
  • September 30, 2012 at 12:33 am
  • Report post

Ladycoz,
Two questions!
1) Can I ask the name of your insurance company??? Many ins. companies will not cover PFO closure, unless a patient has had 2 FULL blown strokes (I know it does not make any sense, the costs and pain/suffering is very high in stroke patients (rehabilitation, therapy, disability, etc. etc.) it is really backwards - BUT the insurance companies and the FDA cite the CLOSURE 1 study - the results of which show that PFO closure with the device (the "old" device used in that study) is no better than if a patient is given the blood thinner medications. Of course all of this may change very soon when the RESPECT study (USA) and the PC Study (Europe) reveal their findings - news is that the devices used are much better than those in the CLOSURE 1 study and with much fewer complications. This is one reason why the FDA has NOT approved PFO closures - patients had a high complication rate after device placement (namely things like stroke, Atrial Fibrillation, etc.)
2) Have you checked out the "PFO Research.org" web site, and/or the PFO research site on facebook??? You will find that closure does not always solve all the problems, so be prepared for this, OK??? So much depends on things such as: A PATIENTS AGE (we all have had our PFO's since birth .... our heart and our body has compensated for the problems all along .... structurally your heart has changed, sometimes it is not always a good idea to just rush in and change things that the heart has already adapted too. Also EVERY PFO IS DIFFERENT - some are worse than others (i.e. the size, the amount of shunting, does the patient also have a Atrial Septal Aneurysm, that is sometimes seen in PFO? Does the patient have 2 way (bidirectional) shunting which is more worrysome?, etc. etc. etc.) I am not trying to sound negative here - but just realistic. I have done a lot of studying about this - closure does not always stop the symptoms or the problems and SOMETIMES things get worse after closure. At the very minimum, everyone should get a 2nd opinion by a qualified Cardiologist before considering any surgery!
Take Care!

Chicken74

I have Culinary Health fund that paid for everything but 150.00. That through Casino where I live, I guess I got lucky

KAKLeon
  • By KAKLeon
  • Reply 3419747 · In reply to 3415875 by ladycoz
  • September 30, 2012 at 8:06 pm
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Hi ladycoz, I'm so pleased for you! The neuro and ped cardio were my saviors too. In fact, my regular cardio was angry that I'd had it closed -- even though he'd cleared me at a pre-op appointment! Guess he forgot what it was for (wasn't paying attention).

Your logic was my logic. I had incapacitating migraines for at least 10 days per month and had a TIA, which is precursor for a real stroke if you have a PFO. The nurse is warning you that you will not feel well right after. It is pretty bad. But, have faith and stay calm that those post-op symptoms will disappear. AND be sure that the cardio does a echo at 3 months to be sure that the closure is complete and there are no complications.

I now have one migraine per month for 1-2 days and control it with fioricet. I got my life back by closing the PFO.
K

ladycoz
  • By ladycoz
  • Reply 3424284 · In reply to 3417754 by JSantos
  • October 2, 2012 at 10:20 am
  • Report post

I have United Health care. They support anything the Dr wants as long as he puts in a letter of medical necessity. Like you I have done lots of research on the matter. I am apart of the PFO research group on FB. I refuse to think that surgery is not what is best. If you have ever seen a stroke debilitate another human being you would understand. My mother is in a nursing facility now unable to walk or feed herself. My sister had a stroke at the age of 40 and was in a wheelchair until she passed from another stroke at the age of 44. If this surgery will help prevent me from having a life changing stroke then that is what I am going to do. I just went to the ER yesterday with having adverse effects from the Plavix. I was having major MAJOR dizziness. So I have stopped the plavix and feel much better now that I have flushed my system with IV fluids. Although you read the negative about having the closure you read even more of the waking up and feeling wonderful after the procedure.

JSantos
  • By JSantos
  • Reply 3425813 · In reply to 3424284 by ladycoz
  • October 2, 2012 at 6:50 pm
  • Report post

LADYCOZ!!!! et. all
I was NOT trying to be NEGATIVE re: PFO Closure! I am simply stating the facts ..... reread my post above, look at it with a open mind and you will see that I am giving a very fair, unbiased opinion. It is the REALITY for many of us .... at least until the new studies (RESPECT, PC Study) come out! PLEASE REREAD MY POST!
Yes, I have had strokes, so far only "mini" strokes, but I am still having problems (mainly left sided weakness/clumsiness). Yes I have a BAD PFO - with 2 way shunting AND a Atrial Septal Aneurysm - my cardiologist and my neurologist believe I am at extra HIGH risk for a BAD event because of these features (ASA and bidirectional shunt). This is why I have been unable to work as a RN for 4+ months now :( Still my insurance (BC/BS) will not pay for closure. There are pros amd cons to everything. We live in such a litigious society and this is why the FDA has not approved the devices yet. I WAS SIMPLY TRYING TO BE HELPFUL HERE - YOU AND EVERYONE DESERVES A 2ND OPINION

MountainNB

This appears to be a helpful site to me. Thank you. My neurologist sent me for heart tests and I have a high grade #4 PFO. I went to neurologist thinking he would perform neuro tests including a spinal tap and others for my Brain MRI results and my horrible neuro symptoms. Instead I had two bubble echo tests...trans-cranial test. He wants the hole shut. Cardiologist is pulling back from having it shut. Talks about my esophagus stricture making it risky and the Plavix I would have to be on for the rest of my life. Cardio thinks I have MS or something else neuro that is complicated. I am finally going to a good teaching hospital in Denver about my eye symptoms and have been referred to another really good hospital....

I have had tachycardia most my adult life and murmur but have never had anyone take it seriously. My brain spots are multiple and round and oval. The neuro (who is a nut by the way,,,acts like one) says I may have had small strokes and in the same breath says all people over 40 have spots on their brain. (my foot reflexes almost went for his nuts when he said that). My short term memory is scary and I have a horrible year long body twitch...my fibromyalgis dx past 17 years is off the charts and my eyes hurt and very sensitive to light.

I'd like to think that if I had my PFO closed I would feel so much better and be able to go back to my profession and enjoy life more, however, the research does not have me convinced that it's the right thing to do. I made another appointment with my cardiologist and will take my brain MRI film in to him so he can look closer. I have more respect for my cardio than neuro since he has a more professional demeanor and is not condescending and here comes that word again...and is not a nut.:)

I do lose balance and my cognitive abilities are very much affected and this horrible twitch is getting the best of me.

Thanks for listening.

MountainNB

I'd like to add to my previous and first post that my fatigue is off the charts and has been for 4 years. I also live at a high elevation...

JSantos
  • By JSantos
  • Reply 3434522 · In reply to 3431038 by MountainNB
  • October 5, 2012 at 6:11 pm
  • Report post

MountainNB -
Have you gone to www.pforesearch.org and/or also the PFO Research facebook site ??? You will get a TON of info. On the pforesearch.org site there are many physicians that are on he board that chime in and give good info.

You and I have many similar issues. I have been struggling with a neuro issue since 1999 that was once VERY devastating and so weird .... horrible! Much better now thanks to my Neuro (who is crazy - they ALL are!) but is also very, very kind and SMART! They thought I had MS but they now are fairly certain that I have "Transverse Myelitis" that was never diagnosed properly (spinal MRI) when I had the initial attack. I have also had a murmur and palpitations all my life - just recently was diagnosed with PFO that has very concerning features. Cardio is trying to get my insurance to pay!!! Aaarrrggh
God Bless!

MountainNB

Thank you JSantos for writing to me. I WILL go to your site you recommended. And I laughed when you described all neuros. I don't know why the neuro hasn't done a spinal tap...maybe because of my jerking? I also had a brain MRI for possible MS in 1995. I will look up Transverse Myelitis....sure I've looked it up before but all these diseases are running together in my mind. I don't know many details on my PFO except that it is large and my neuro and cardio are not on same page. I do not wish to have a full blown stroke of course, however, the cardio is saying that he'd rather wait to see one bf he patches the hole. shhheeeeesh. So next week I shall take my brain mri films to cardio and ask him if the round and oval spots on my brain are possible mini strokes and if he says yes, I will stage a sit-in in his office until he agrees to close the PFO:) I did that with my obstetrician 28 years ago until he agreed to deliver my 10 pound son who was two weeks early:) Take care, JSantos and I will watch for more posts from you. Aaarrggh is right!

kittysheart

Oh my gosh, this group of folks have explained all my symptoms, problems and experiences. I'm a Atrial Septal Defect - PFO - prolapse heart valve - heart murmur - arrythimas- enlarged heart - asthmatic - with brain seizures. Symptoms from this were TIA's auras, sensitivity to lights and particular flashing lights, temporary occular blindness episodes lasting any time from a few minutes to about 2-3 hours, chronic fatigue that stops me in an instant to collapse on the spot, to migraine headaches, tingling sensations throughout the body, etc. (I can go on more but think you get the picture.) My cardiologist of 3 years has been playing this game saying, he is "going to close PFO because PFO is causing more symptoms as I age" but after testing each year doc then says, " you're not a candidate for the procedure" but never says why not or gives me any answers. The only thing he says is we will see how you are at next visit and ups the meds. Quite honestly I've been discouraged getting my hopes up for a repair only to then be shot down again (3 times with this back & forth already). Realize doctor has issues with the many facets I'm facing - brain - heart -lung so mine is not just one part. The leaky valves and pfo heart issues is scary enough but then consideration with lung & brain come into picture so operation may be more difficult and I will need to find a place that specializes in all major areas combined. Throughout my 55 years, I've have been a hard worker but it doesn't compare to how hard I'm working researching PFO but not getting answers to how to find help or find the basis to make an informed decison which treatment is best. As pointed out, FDA has not approved many closure procedures and insurance companies are reluctant to assist since unapproved FDA procedures. Think there are more folks out there in similar situation suffering because of non-care as insurance & doctor's hands are tied with regulations and legal situations. For the past 2 years in the news there was talk about cardiac stem cell (your own stem cells) can regrow even dead cardiac cells but that too is still investigation and do not see anymore recent reports on it. Surgeons and hospitals make big profits and if simple cardiac stem cells repair (grow closure to pfo) they may be afraid to lose income so why should they put their efforts in this area. After all this time waiting for an answer how to care for this and not receiving any concrete help and continue to research. Lately I've come to the conclusion to give these problems to faith and prayer for as long as I have on earth and appreciate all the meaningful things in life when I can on my "good days". Yes, it is a real possibility I can stroke or have heart attack at any minute but doctor is reluctant yet he is my only hope as he is the highly recommended doctor in this speciality in the State of NJ. Turned to the insurance company for recommendations so they put me in a "management care" (high risk group) where a nurse talks to me on a monthly basis to find out my current health status saying they will have recommendations but now after 6 months realize I'm right where I first started with that program. Found more help from researching websites from "The Mayo Clinic" and "Cleveland Clinic" sites. Also found "http://www.pbs.org/newshour/bb/health/jan-june12/heartstudy_04-18.html" article interesting on: "After heart attack, turning scar tissue back into beating cells".

MountainNB
  • By MountainNB
  • Reply 3436604 · In reply to 3435177 by kittysheart
  • October 6, 2012 at 2:34 pm
  • Report post

Hang in there, Little One. It's a long road, and hopefully we will get to our destination of feeling better soon with the proper treatment we all deserve.

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